What if radiotherapy fails

Options
swl1956
swl1956 Member Posts: 94 Member

Just about everything I've been reading indicates modern radiation treatments properly administered are statistically superior to Radical Prostatectomys concerning quality of life issues. Sounds like they're equally effective. I've now been advised by two different radiologists that 5 weeks IMRT is a good first course of action for my PCa cancer. Let's say the cancer is not eradicated. Which treatment might likely be the next logical course of action or options? ADT or Focal? Sounds like RP might be difficult at that point as Steve1961 has posted about.

Comments

  • Steve1961
    Steve1961 Member Posts: 547 Member
    Options

    Adt is the the LAST I MEAN LAST treatment you want to do it, ruins aman .. five years ago when I chose radiation they did not know what they know now about crib form they know now that Cribiform is radiation resistant if my grade 4 was not cribiform the radiation, most likely would have worked, but I still believe I made the wrong decision at my age I was 57 I should have taken it out a lot of it depends on what type cancer you have your gleeason score and everything else that goes with it. I personally think the radiation seeds actually work just as good as external beam and you have even less side effects right now I open myself up to rectal cancer and I have bowel problems if I would’ve done the seeds, probably wouldn’t have had these side effects , and yes I can do a focal treatment now if iI want cryotherapy would give me 50% chance but since it’s crib form and there’s always a chance of micro mestasisn and it became back a third time in the prostrate, and it was too close to the ureathra . Then I’d have no choice, but ADT because they would not be able to treat it focal again in surgery, then would be extremely difficult am choosing to remove the whole thing and hope for the best.

  • On_A_Journey
    On_A_Journey Member Posts: 102 Member
    Options

    I had a radical prostatectomy in 2015 and I am now one of the statistical 30% experiencing a biochemical recurrence. What I always though was a bit odd, is that for people in my situation, the definition of recurrence is a PSA reading far, far less than for a person who had radiation as their primary treatment; 0.2 vs. nadir + 2.0. It's like radiation is expected to be less effective. I'm panicky enough knowing that my PSA is around 0.6 at the moment. Imagine if I had radiation first and my oncologist said to go away until it reached 2.0? I would probably be terminally metastatic by then!

    BUT...I'm only talking about the options put to me, i.e. 'traditional' radiation. I wasn't a candidate for seed. I'm not sure about the more modern methods discussed by others here, hopefully they will chime in.

    In a nutshell, I believe that you can only get radiation to the same spot once. My prostatectomy wasn't actually successful and I needed salvage radiation six months later, to the prostate bed. I can't get it again. My future consists of occasional PSMA PET scans to determine where the cells are. If they are picked up in a node, I will be able to get them radiated, but if they are still undetected and my PSA starts to exponentially rise, I'm looking at ADT.

    Go ahead with modern radiation treatment if it is what you prefer. Don't worry about recurrence, who's to say you won't be struck by lightning or get run over by a bus in the meantime? 😉

  • eonore
    eonore Member Posts: 181 Member
    Options

    There are a variety of salvage treatments after radiation. Cryotherapy and HIfu are both candidates. The old argument, that prostate removal gives you a second bite at the apple, doesn’t make much sense. Since the cure rate for radiation and removal are effectively the same, surgery doesn’t seem to offer any advantage This makes sense, since radiation can treat a wider field and cure those cases where the cancer has escaped the capsule but is still confined to the prostate bed. In my case, I started with removal, but pathology showed extracapular extensions I subsequently required salvage radiation and ADT. Had I started with radiation, maybe I only would have needed one treatment.

    There are no guarantees no matter which treatment you chose. Both are equally effective The reason I would chose radiation is because of the better side effect profile

    Eric

  • Clevelandguy
    Clevelandguy Member Posts: 1,039 Member
    Options

    Hi,

    There are no guarantees with a cure for Prostate cancer. If you go IMRT this can also give you quality of life issues, hopefully not many but possible. So its a personal choice, just research it and be prepared for the side effects and also what comes after if you cancer returns, just as you should for any treatment. Need to plan your next course of action beforehand so you know what you are getting into. From what I have heard from other survivors ADT can have some pretty nasty side effects, some folks tolerate it well some don't. Focal might be a good alternative but from what I know there is not a lot of long term studies on its effectiveness. So if focal fails, what’s next? Need to plan ahead.

    Dave 3+4

  • Oldernow
    Oldernow Member Posts: 35 Member
    Options

    Hi -

    My two cents worth...

    At age 76 (June of 2023) I was told by my Cleveland Clinic urologist and radiation oncologist that ADT and IMRT radiation was my best option. Started ADT (Lupron, three 6 month injections) shortly before 28 days of radiation).

    The daily radiation was annoying but I had no issues with the procedure. My PSA went from 20 (pre-treatment) to <.03 and has stayed there. I have been told that is due to the combination treatment.

    The Lupron (ADT) is another story. It may "starve" any remaining cancer cells by removing their favorite food (testosterone) but, for me, the side effects have really messed with my "quality of life." My testosterone level went from a relatively normal 512 ng/dL to <12 ng/dL. The resulting loss of muscle tone and stamina is truly annoying. The expected hot flashes have been mild and tolerable. Weight gain around the middle has left me "flabby." To use my grandkids terminology, my junk has shrunk - a lot! My libido is about zero.

    I have been doing a lot of research about what happens AFTER ADT. I have found that at my age (77 next month) my testosterone may NOT recover or may take a very long time (years) to recover. I'm scheduled for my third Lupron injection in early April. The goal is to keep my testosterone low for a total of 18 months. I have decided to skip that last injection since my testosterone level will probably stay low longer than that anyway. I'll have blood work every couple of months to make sure both my PSA and testosterone levels stay low.

    If the end result is that I have beat the cancer then everything I have mentioned above was worth it. I have developed mild radiation proctitis (rectal bleeding) which should resolve with time and some medication. It hasn't affected my daily routine at all. We're all different and react differently to the various protocols the doctors have devised over the years.

    Guess that was more than "two cents worth." 😉

    Good luck on your journey...

  • Clevelandguy
    Clevelandguy Member Posts: 1,039 Member
    Options

    Hi On a journey,

    The reason between .2 and 2 is because radiation does not kill all the Prostate cells. Just the ones that are cancerous +a small margin. With your Prostate removed your reading should be less than .1u which is called undetectable. If it climbs towards the .2u mark something could be going on. The Prostate cells still alive after radiation will generate PSA but the 2u is kinda the standard mark that something might be going on. In my humble non medical opinion look for a non increasing PSA over many readings.

    Dave 3+4

  • jc5549
    jc5549 Member Posts: 41 Member
    edited March 16 #8
    Options

    I am 59 years old and six weeks post robotic prostatectomy. I am dealing with the expected incontinence and erectile function loss and have great hope that I will improve vastly from where I am today. I do not regret my choice yet, I do hope that my continence will be far better than it is currently in the very near future.

    Things I researched and considered when comparing radiation to surgery:

    + Radiation and Surgery offer very similar cure outcomes, I do not believe one is superior to the other. The fact the PSA does not become undetectable after radiation does not influence longterm cure.

    + You should have a long discussion with your provider regarding high risk features you may or may not have in your individual case. Prior survivors discussed cribriform changes (some types of changes can be radio-resistant when combined with BRACA features) and ADT combined with IMRT. If high risk features (Group 2 high risk or Group 3) exist you may be at risk for multi-modal (radiation and surgery) therapy. The order which you go with high risk may matter. I do believe (just my opinion) there are fewer longterm complications if you have surgery before radiation in the case of multi-modal therapy. If you are high risk and opt for surgery the surgeon may intentionally resect one or both nerve bundles in order to achieve negative margins (your individual features really matter). This should be a discussion that is had BEFORE intervention.

    + If you are G2 Intermediate risk or lower then multi-modal therapy should be irrelevant and you should be cured with a single intervention (fingers crossed).

    + All forms of therapy come with a price, there is truly no free lunch in this area. Surgery is far more likely to cause incontinence and radiation far more likely to cause rectal symptoms or problems. In my opinion, both forms of intervention are comparable in terms of erectile function 2-3 years after therapy. Surgery continues to improve and radiation continues to degrade over years. In the case of surgery, PICKING THE RIGHT SURGEON IS EXTREMELY IMPORTANT!!

    I wish you well and feel this choice is the single most personal thing we do. After we pull the trigger we live with the consequences of our decisions. Having this group to interact with has helped me on my personal journey more than you would know.

    jc

  • swl1956
    swl1956 Member Posts: 94 Member
    Options

    Quote by; On_A_Journey: "Go ahead with modern radiation treatment if it is what you prefer. Don't worry about recurrence, who's to say you won't be struck by lightning or get run over by a bus in the meantime?" 😉

    I'm thinking this is a better philosophy than I'm now following. Throw a dart, say a prayer, and see where it takes me. 🙄

    I've been driving myself insane trying to make a good choice. Four months has passed since diagnoses and I'm still floundering with a decision. I used to pride myself for being a methodical calm detail oriented person, but this PCa experience thus far is turning me into a paranoid obsessive compulsive nut case. Go to bed worrying and wake up worrying. I've scheduled a PSMA PET scan, a colonoscopy, and other visits with urologist, oncologist, radiologist just in the next couple of weeks. Doing this while still employed. Anyhow, sorry to vent, but writing on this forum does have offer me an outlet of sorts. I know some of you may have far worse current situations than mine. I apologize for acting like a wuss. I very much appreciate the time you guys take articulating your experiences and opinions. 😀

  • Steve1961
    Steve1961 Member Posts: 547 Member
    Options

    Must not know my story I had radiation done five years ago. They did not know that cribriform was radiation resistant so here I am after being treated with external beam radiation and a booster. My PSA dropped to 0.9, but I have had three consecutive rises 1.2 1.6 1.9 that’s not even two points but I was concerned went for testing and Yep cancer is still there so now I am having Radical salvage prostate surgery done and I’m not too happy about it. Look on YouTube Robert Reiters video. They are doing surgery there at UCLA If your lymph nodes are infected, they stick a dye in you and they know exactly which nodes have cancer rather than guessing.

  • swl1956
    swl1956 Member Posts: 94 Member
    Options

    Thank you for your detailed response. There must be relief at least for having made a decision? I hope your continence improves in the days ahead. Incontinence concerns me more than sexual function. Already having some minor incontinence (slight dripping after urination) I'm imagining it will be far worse after a surgery.

    After a biopsy at 67 in mid November 2023 having a 4.3 PSA and resulting 4+3 gleason puts me in the GG3 unfavorable intermediate category. A Prolaris Test Indicated positive cores <34% involvement T2 stage recommending single modal treatment Radiation or Surgery. A more recent biopsy (Feb.27) indicated some minor involvement 3+3 gleason 5% involvement in the left lateral wing which was not seen in the earlier biopsy (leading me to believe even the best biopsies are not conclusive). And, there was a cribriform pattern noted in the 4+3 sample which also was not noted in the earlier biopsy. Seems to me biopsies should be more standardized. The two biopsies I've had are of different formats and hard to compare. My most recent PSA is 5.7.

    I've been dealing with a Fox Chase oncological surgeon whom seems good, but I really have no idea how good he would be doing an Radical Prostatectomy. He's offered it as a choice, but not pushing it. I've recently found out that there is a more senior surgeon at Fox Chase that has a great track record, but at this point would be uncomfortable for me to ditch the man I've been dealing with.

  • jc5549
    jc5549 Member Posts: 41 Member
    Options

    It is definitely better being on my side of the decision for treatment.

    Fox Chase is very strong especially for multi-modal therapy (not applicable in your case by what you posted). There are many other opportunities for surgical opinions near Philadelphia (New York, Baltimore, Cleveland come to mind) if you are concerned about your current surgeon’s experience.

    I travelled 3 hrs from home for my surgeon of choice because it mattered that much to me.

    Good luck my friend,

    jc

  • Rob.Ski
    Rob.Ski Member Posts: 148 Member
    Options

    You might be able to get radiation if surgery fails and still get cured. ADT is not a cure. Focal therapy is out there but, I'd take radiation after surgery over focal therapy after radiation. Equal success rates between RP and radiation means equal failure rates. There are no guarantees. I chose RP and and am fully continent, mild ED overcome with vitamin V. Make your best educated decision that is best for you and don't look back.

    Best of luck.

  • centralPA
    centralPA Member Posts: 275 Member
    Options

    Lots of follow-up treatments for RT failure. All of the focal treatments like HIFU, freezing, laser, the new Nanoknife treatment. HDR brachytherapy to the spot. SBRT to the spot. Whatever new thing they are working on while you kick the can down the road. Just doing AS on it, running out the clock. Manage with ADT.

    Tough decision…a lot more ambiguity going down the RT road.

  • swl1956
    swl1956 Member Posts: 94 Member
    Options

    Hi centralPA

    "Tough decision…a lot more ambiguity going down the RT road."

    If you don't mind me asking, which road did you take and how did it turn out?

  • On_A_Journey
    On_A_Journey Member Posts: 102 Member
    Options

    That makes sense! Thank you for that. I was clearly guessing, having only concentrated on my own circumstances.

    We never stop learning, do we?

  • centralPA
    centralPA Member Posts: 275 Member
    edited March 18 #17
    Options

    I’m not at the treatment phase yet, but I cast my die to RT.

    My prostate was 140cc and I had BPH, was diagnosed with 3+4=7 with less than 5% of grade 4. The large size and BPH both counter-indicate RT. I needed to treat the BPH, didn’t want to undergo prostatectomy, so I had a HoLEP procedure, which reduced my prostate to only 40 cc volume. I’m on active surveillance now, if I do need to treat, I’ll treat with radiotherapy. It was always my preferred path, and the surgery I had makes a RALP a bit trickier. So far so good.

    In doing my research up front, I settled on HDR Brachytherapy as my top choice if it was available. Puts the radiation right where the PCa is. Unfortunately it's not an option after a HoLEP, so it will be some sort of EBRT. But hopefully I'll just die with it.